“True Faces of Rare”: Preferences for authentic imagery in disorder-specific materials by people living with rare diseases and their communities

Abstract

This study explores the preferences of people living with rare diseases and their communities regarding the use of authentic imagery in disorder-specific materials. Through a digital survey of 50 respondents, we examined the perceived importance of using images of people affected by a rare disorder in educational and awareness materials about their specific disorder. Results reveal a strong preference for authentic imagery, with most respondents rating this as highly important. People living with rare diseases expressed that seeing “real faces” of those with the condition fosters a sense of connection, combats isolation, and raises public awareness through greater exposure. Conversely, some respondents noted the risk of stereotyping based on appearance, indicating the need for sensitive, accurate portrayal. Our findings suggest that authentic imagery can improve engagement and create an emotional connection with materials, by those living with rare diseases and their communities. Furthermore, we provide actionable recommendations for developers of these materials including patient advocacy groups, research institutions and pharmaceutical companies.